Friday, October 17, 2014

Interviewed By FasterCures

Some of my thoughts revolving around FasterCures' Consortia-pedia project

Why are you so passionate in finding ways to accelerate research for cerebral palsy?

The best way to answer would be to introduce you to my thirteen-year-old daughter who was diagnosed with CP about a year after she was born. Everything flows from my personal desires to help her, and then from my more professional interests in management. Ultimately, I'm passionate about accelerating “good work” of all kinds by groups operating in and around the CP sphere.

You created the Consortia-pedia mind map, a great way for visualizing how to develop and manage biomedical research consortia in an interactive way. What impelled you to do it?

Well phrased. A mind map is a visual thinking tool – cloud-based, in this case – that I routinely use to help (me) make sense of complicated stuff. Consortia-pedia is laden with great info. I thought a map might help to engage and expedite other peoples’ understanding of it, and maybe even motivate them to use it. 

Why are you interested in research-by-consortia?

I'm trying, generally, to bring the best of the best management thinking to CP-facing organizations. I recognize research-by-consortia as a promising way for people to come together to address shared problems and/ or enable innovation. I’m interested in how to do those things well.

What challenges in cerebral palsy research do you think could be best addressed by a consortium-based collaboration?

There are currently formal and informal cross-sector networks dealing with CP in its many aspects. NeuroDevNet, a Canadian network dedicated to neurodevelopmental research, is one example. To my knowledge, though, none actually calls itself a consortium.

There are also standalone nonprofits with their own sets of priorities, most notably Cerebral Palsy International Research Foundation, CPIRF, which funds cutting edge research. Its priorities touch on at least three of the four consortia “objectives” your work uncovered: basic science, products, and biomarkers (to identify babies at risk, for example).

What's your relationship to those groups and other CP organizations?

I’m a parent living under a CP umbrella. I’m also in the challenging position of being an outsider relative to those groups. So, going back to CPIRF, for example, I’m 100% on board with its research agenda but I’m equally in the dark as to how it’s being managed. 

I want the leaders of all of our organizations to use the best available tools and resources. Consortia-pedia is a great resource for people involved in starting or running complex collaborations. I doubt, however, that our leaders know about it. If my map could somehow play a part in drawing their attention to it, I’d be a happier camper. 

From your perspective, what can biomedical researchers do better?

To arrive at faster cures across the board, we need to do both more and better work. It follows that I'd like for leaders to be open to better ways of maximizing the overall effectiveness of their organizations in carrying out their missions.

Consortia-pedia offers management advice from a strong translational science perspective. There are other folks coming at (the subject of) “collaborating better” from business management and organizational science perspectives who also have valuable things to say. They’re getting to where they’re now able to offer shortcuts and tools that any consortia leader could readily apply -- and so should pay attention to.

That's an example of a way organizations can “open themselves up” to the whole big rest of the world for help.

Do you have another example in mind?

I do.

I'm high on the idea of making much greater use of the experience, creativity, and talents of the many (tens of millions, in the case of childhood neurological disorders and conditions) patients and family members who have personal stakes in our organizations, consortia included. Who knows how many of us might be willing and able to work to advance our favorite missions, and to do so for little or no compensation?

It's becoming easier and easier to connect with parents like me in meaningful ways. As I hope my map shows, we can be more than just potential donors and/or passive recipients of one-way messages.

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